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Hi, I've been diagnosed with undifferentiated mixed connective tissue disease/Lupus.

Posted , 3 users are following.

shirleygirly
shirleygirly

I have been struggling all my life and have only just been diagnosed. I hav been treated for so many different ailments and due to a skin rash,

painful joints and muscle pain last summer, I asked for a lupus test which came back positive. I am now seeing a rheumatologist and am on prednisolone tabs and many others to say the least.

I am working full-time at the moment after a phased return since January of 32.5hrs, but currently am not able to do morning's. I have requested to visit my OH Doctor to review my hours. I take everyday as it comes. Some days are difficult and I just pace myself. I do enjoy my job. I am a librarian at a primary school in the borough where I live and adore working with the children. We can only try to do our best with what we have in our lives today.

God Blessings be upon us all.😀

2 likes, 4 replies

4 Replies

  • sandra39631
    sandra39631 shirleygirly

    Posted

    I too struggled from age 14 ,being treated for everything from anxiety (all in my mind I was told) to rheumatiod arthritis but was finally diagnosed at age 44 when systemic lupus attacked my brain. That was 18 years ago  but through that time I have been unable to work due to pain and fatigue. It took me around five years to get over the first major flare but as you say we do the best we can . Azathiaprine, hydroxychloroquine  and prednisolone saved my life back in '98 and I'm grateful to the hospital staff that fought for me.I still have bad days but the good days outweigh them.

             All I can say is listen to your body, rest when you need to and keep stress to a minimum.I hope all goes well for you.

  • shirleygirly
    shirleygirly

    Posted

    Hi Sandra39631,

    It seems we have a lot in common. Do you still take the prednisolon tabs. Because I tried the others but found they made me ill, as I am allergic to anti-inflammatory meds.I feel so much better on the preds it has lowered my low grade fever and I don't sweat at nights as much as during the day, also I am on a high dose of

    Tramadol because my difficulty lies mostly in my back with

    really bad sciatica in both buttocks and legs.

    Each day is a blessing for me as I would hate to lose my independence.

    Would love to hear what you think?

    • sandra39631
      sandra39631 shirleygirly

      Posted

      Hi Shirleygirly, yes I do still take the prednisolone but only 5mg per day. It used to be 60 mg daily so I don,t complain and since the dosage dropped the weight also fell off.At the moment my specialist has lowered the hydroxychloroquine by half ( now 200mg daily instead of 400). I have noticed that I have more joint pain and get tired more easily, but I changed hospitals to a nearer one and this new one doesn't  use the 400 mg dose. Silly really as this dose has kept me stable for a long time but we will see.

       I agree about losing your independance. I lost mine for the first two years after my major flare and would hate to be in that situation again.

                 I still have the night sweats but hey that could be my age. lol

       I must admit I have tried Tramadol for the pain but it made me sleep way too much and I was groggy all the next day so that ruled out the tramadol. After all these years I think I have gotten used to coping with the pain without taking so many meds, and on the really  bad days I rest as much as I can. Not working and having  grown-up  children that live away from home makes this easy.

       The best advise given to me was listen to your body, rest when you need to and don't stress the small stuff. I lost a few friends and also some family who saw me as being well and didn't understand that although I looked well I felt so ill, but I was told to expect this when I was first diagnosed, so no surprises there.

       Hope you continue to improve, life with lupus isn't all bad.

       

  • michelle81002
    michelle81002 shirleygirly

    Posted

    Hi I have just been diagnosed with exactly the same thing today. Believe it or not it was a 2hr apt with a gynaecologist that got me on my way to being diagnosed after several years of being treat for many different ailments by my doctor. They have me on mst for the pain but one of the main things I would say I have struggled with the most is the fatigue. I was always very energetic, very very energetic, more than the usual and now it's a complete struggle just to get dressed. I was always nicknamed Monica by my friends (from Friends the tv show) and now I just feel that ashamed that I avoid having people round my home. Don't get me wrong I'm not dirty by any means but I'm nowhere near as clean and organised as I once was. I haven't been able to decorate for a long time. I have taken up jewellery making to stop me from losing my mind but how do you cope with the fatigue? X
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